From the interviews with children series: Ewa tells us what it is like to have a brother with Asperger syndrome

What is it like to have a sibling with Down syndrome, Asperger syndrome or autism?How does disability affect the life of siblings?What problems do they have to face?What does their everyday life look like?

What is your first memory of your brother?

Ewa (13): I think my very first memory is of playing with a Hot Wheels track. But what I remember the strongest is when I went to the kitchen, and Kuba stood there, holding a knife to his heart, and shouted that he hated himself. I cried a long time after that, and I was very worried about him. I associated him with screaming and anger.

If you were to tell a stranger about your brother, what would you say?What would be important?

He’s 15, and attends the third year of high school. He has Asperger syndrome, but you can’t tell at all unless he gets angry and shows his dislike of new places. He’s the loner type. He doesn’t like noise or crowds, but neither do I. Kuba is good at the sciences and can draw beautifully.

Does your brother’s disability affect how you feel?Do you notice any differences between your life and the lives of your friends?

Kuba used to affect my life more, when he didn’t want to live anymore and screamed all the time. When he had these episodes, I always hid somewhere and cried. I worry about him now, too. For instance, when I see that he’s deliberately scratching himself. I often feel sad, and my art at school is always dark and grim.

What was, or what is, the most difficult part about your relationship with your brother?

The most difficult part for me is that Kuba drives himself into despair.

What helped you, or still helps, in your situation?

My parents! They understand me perfectly and talk to me. I also go to extra classes at the community centre.

If you could, what you change in your brother?

I only wish he would accept himself and stop being a pessimist.

Ewa’s parents talk about how they try to help their daughter:

We never put too much strain on her, and never blamed her for Kuba’s mental state.

We helped Ewa defend her personal space: we taught her that she could say no to her brother. That she wasn’t there to be at his beck and call. Even if Kuba found that hard to accept.

We try to notice her needs and satisfy them. We teach her to ask for what’s important to her. We tend to forget about her matters, but we tell her that this doesn’t mean that they’re not important to us. Ewa understands that we might forget about something due to Kuba’s condition.

When we see that she’s feeling low, we ask if she wants us to be with her. She usually does, but if not, we let her go through it on her own.

Ewa learned about her brother’s diagnosis at the same time as he did. We explained what Asperger syndrome is to her and how it affects Kuba. Before the children learned about the diagnosis, we talked about Kuba’s difficulties as his normal traits that still influenced his life.

If we see that our children are doing something together, we consider it a priority and try not to disturb them.

Ewa used to go to a psychological consultation centre, where she was able to talk about her situation with a specialist.

Do you work with children with special needs and want to tell your story?